Advocacy Stories: Featuring a Poem & Interview with Phoenix

The theme for this week is self-advocacy. Self-advocacy means standing up for yourself, speaking up for your needs, or representing your own best interest. There are many times when people with PF need to self-advocate and reach out for support, community, or a second opinion. 

Here are some examples of times that people with PF might need to self-advocate:

• Before receiving their diagnosis, they may need to advocate to get tests run
• Once receiving a diagnosis, they may need to advocate for a second opinion in case of misdiagnosis
• After receiving a diagnosis, they may need to advocate for the treatment plan that works best for them (such as starting supplemental oxygen) 
• Patients may need to advocate for referrals to other health professionals or clinics (such as pulmonary rehabilitation centers) 
• Once setting up a treatment plan, they may need to advocate for changes if symptoms worsen or change over time
• If patients experience side effects from medications, they may need to advocate for options like alternative therapies or dietary supplements
• Patients may need to advocate for their insurance to cover certain medications or treatments
• Patients may need to advocate for their relatives to become paid caregivers
• Patients may need to advocate for themselves to help their friends & family understand what they’re going through
• Patients may need to advocate for themselves in the workplace and to request accommodations based off their particular needs

The pandemic makes self-advocacy even more tricky than usual! More and more people are being diagnosed with PF after contracting COVID-19, and it is very difficult for them to find doctors who know about the research and can understand the realities of COVID-19 long haul. 

Phoenix is a community member who models self-advocacy daily. She developed PF as a result of COVID-19. If you or someone you know is struggling with PF, COVID-19, or COVID-19 long haul, please read on to see Phoenix’s poetry, story, and advice. If her words resonate with you, please comment below with your story too – and stay tuned for more advocacy stories and interviews soon.

Phoenix wrote this poem to say that being sick doesn’t make her less than other people, and it doesn’t mean that she can’t do things:

I am just sick, I’m

Not less than you

I can do the things

That you can do.

Don’t look at me

Like you’re better

Than me. I may not

Run, but I have a voice

To speak. I may struggle

To breathe, I may cough

With unease, but don’t

Judge me please, don’t

Make me feel unseen.

Phoenix also connected with staff at PF NOW! to share her story. The interview is below.

PF NOW!: When did you get diagnosed with PF, and what caused it? 

Phoenix: I was diagnosed in May of 2020. Severe COVID caused it.

PF NOW!: What symptoms do you struggle with?

Phoenix: Shortness of breath, hypoxia, chest pain, and coughing.

PF NOW!: Have you been able to find the support you need to fight PF? If so, how did you find it? And if not, why do you think it’s been so hard?

Phoenix: I have a pulmonologist and supportive friends and family and a community of wonderful people, some of whom also have COVID induced PF on facebook support groups.

PF NOW!: Can you think of a time when you had to stand up for yourself or speak up about your needs? What was that like for you?

Phoenix: It was difficult. Especially when I had to break the news to my family. They were devastated. But over time, they came to accept it.

PF NOW!: The theme for the week is self-advocacy. We know you’ve fully embodied that – after all, you fought for your life when no one else expected you to survive! With that in mind, what advice do you have for others who are trying to advocate for themselves?

Phoenix: Never give up. Keep fighting. Find a doctor who listens. There IS hope.

PF NOW!: Thank you so much for participating in self-advocacy week. If there’s anything else you’d like to share, please feel free to include it here. 

Phoenix: No, that’s it. Thanks for having me.
To connect with Phoenix and others who relate, please join our Facebook group here. Once again, stay tuned for more advocacy stories from people with PF – we’ll be sharing more interviews soon.